Thursday, December 30, 2010

Communication Error (by LeMira)

Think of the last conversation you had that made you frustrated.  What made you frustrated about that conversation?  Were you trying to make a point, teach someone a concept, or give someone instructions?  Were they just not getting it?  Or did you just feel like the other person wasn't listening?  Did you feel like you were talking to a brick wall?  Did you get a blank stare in return?  When the person did respond, did he make sense?

Communication continually is a problem, a road block.  Most of my frustrations are because I feel like I'm being ignored.  I lose my temper because I feel like my son responds in slow motion or that I have to repeat myself five times, if not more, to be understood or heeded.  I hang my head in shame at the times that I've yelled because he just didn't move fast enough.

It's so easy to get caught up in how something affects me, that my life is being disrupted or put in slow motion, but what about him?  I've been thinking about his side of things, and maybe this is how he sees it.

Scenario 1:  Imagine you're working on a project.  You're so engrossed that you've blocked out the world.  Vaguely, you hear background noise, but it isn't related to what you're doing, so you push it out.  You're shaken out of your world as you hear your name screamed at you.   Your mom says, "I've called you three times, you need to listen when I'm talking to you!"  You hang your head in shame and apologize for not hearing her, but you're more frustrated that you were expected to respond when you had no idea you were wanted.

Scenario 2:  You climb into the car after school, and you know what mom is going to ask, and so you say, "I had a good day at school today.  I had fun."   You expect this to deflect her questions because you offered it first.  Mom then asks, "What did you learn in math?"  Immediately you think of your teacher and the classroom.  You think about the worksheet and that your aide helped you with the guided practice.  Mom tries to prompt you with questions about adding and subtracting, but you're confused.  What is she asking?  You might even remember your teacher working problems on the board, but you can't remember what she called it.  Your mom asks again, and you realize she needs an answer now.  "I don't know," you say.  The words are jumbled in your head.  

When you try to tell her about recess and what you played, you can't remember the name of the friends you played with or that one thing you did.  You can see it in your mind, but you can't remember what it's called.  Instead you say, "We had three recesses today."  

Homework is a nightmare.  You read the words, but you don't know what they mean, and you don't know how to ask what it means.  Your mom is reading it to you, but you don't understand that one word.  She doesn't explain it the same way the teacher does.  In class, you had to use a green crayon, but your homework says to use a yellow crayon; it's not the same.  Mom is trying to explain it, but she's going too fast and her voice is getting louder.  There are so many problems on the page.  It's now 4:15, you'll never get done by 4:30.  "I can't do this!" you shout.

As his mom, I'm realizing more and more that I have to slow down, be patient.  He is trying, he really is.  Some days I'm worn out from saying things five different ways until he understands.   I want him to understand me the first time.  The more I lose my temper, the more he does.  He reacts the way I do based on his observations of me -- because that's the way he learns his social interactions.  Some days, I'm looking into a mirror and listening to a recording of myself.  It's not pretty.

However, there is hope.  He is getting better, and so am I.  Instead of rushing him or getting angry when he can't recall a word, I try to prompt him or wait patiently.  He gets frustrated easily because he knows he's not fast enough, but I'm learning to give him time and not make him panic.  The words are there, and I know how frustrating it is for him to have blank spots for simple words like "car" or "party."  These are words he knows, but somehow he blanks out.  If I'm always getting angry, he'll never have the confidence that he can do it, and he'll always think that he can't do it or that it's too hard. 

As in everything with my son, I have to give him time, and not my timetable, but his.  And that is the hardest part for me.

Thursday, November 11, 2010


A Post By LeMira

I decided to keep J.R. in Kindergarten this year due to his social and language delays.  So far, I feel very good about it.  I also chose to put him in a charter school.  Overall, I'm happy with that decision, although there are some major disadvantages there (i.e., the lack of speech therapy that he really needs).  The biggest advantages are that he is able to go to first grade for math, and his Kindergarten teacher tries really hard to help him with his math page each day afterward.  She really makes an effort to help him out and give him individualized attention.  J.R. was doing Kindergarten math, but it was too easy for him.  Homework lasted five minutes, which I think isn't bad for Kindergarten; however, he was getting nothing out of it.  First Grade math seems to be on his instructional level, which all teachers know is exactly where you want them to be.

(Quick lesson in teacher lingo.  There are three basic levels when it comes to a student's learning.
Too Hard= Frustration Level.  At this level, you know you need to take a step back.  The child is so frustrated and confused that absolutely no learning is happening.
Just Right = Instructional Level.  The Instructional Level is the one where the child is learning and it may seem a little hard, but with some practice it becomes easy.  Homework and classroom work should be at the instructional level.
Easy= Independent Level.  Kids should be reading books at home at the Independent Level.  Kids are who being taught too much at this level are bored with school, usually.  You find most of your "troublemakers" at school are the ones stuck in the frustration and independent levels.)

Sooo. . . back to J.R.  Once he started bringing home First Grade work, there was a huge jump in how long it took him to do homework.  We spend at least 30 minutes, four days a week, doing homework.  As a teacher, I might think this means it's at a frustration level because a First Grader or Kindergartner should be spending roughly 10-15 minutes a night on homework, not 30.  The thing is, as his parent, I know this is just right for him.  Why does it take so long?  He doesn't understand the instructions or what the problem is asking. It's his language delay.  It takes me three to five attempts to explain the problem/instructions just the right way so he will understand.  Perhaps one day I will find that "one way," but I don't think I'm catching on.

When I first told J.R.'s teacher about his homework, she was surprised at how long we were spending. . . until I explained why.  She understood completely because she experiences the same type of thing with him in class.  The biggest difference is that he doesn't fight her.  He always fights me.  Always.  Every day I hear, "I can't do this. It's frustrating." Without fail, I will hear that phrase at least once (if I'm lucky it's only once.)  I admit that I'm glad that he chooses to fight me and not his teachers, but some days I can't hold back, and I join the fight; which only makes it worse.  The thing is, I know that I get to look forward to this for the next twelve years.

Wednesday, November 10, 2010

Vacuum Therapy and Trust (by LeMira)

I swear it seems that any time a person (usually another parent or friend) tells me that they just can't tell that J.R. has any sort of social delays or signs of PDD-NOS, he is sure to have not one, but several reaffirming PDD moments.  It's like they happen to remind me that yes, it's real.  Yes, I'm not just making up these stories.

When my son was young, it seemed like he loved the vacuum.  He'd crawl around the house, find the vacuum, pull up and stand next to it, and just stare.  He wasn't scared of it, it seemed,  for so long.  In fact, he seemed infatuated with it.  It was a little odd, I admit, but cute, nonetheless.  It was nice that I didn't have a screaming toddler when I vacuumed.  Today, I realized that those days are gone.  Honestly, I think they disappeared after our last vacuum broke and we threw it out.  With that vacuum when J.R.'s comfort; this is the first vacuum change in his life.

The best thing I ever did was make a weekly chore list for J.R. that doesn't change.  He's very good at doing his chores as long as it's routine.  Recently, we had to change his Wednesday chore from vacuuming his room to sweeping the kitchen (you'll understand why as you keep reading, I hope).  J.R. asks every week about this, "We don't have to vacuum, right?"  He knows, but he wants and needs reassurance.  Today I, being the wonderful mother I am, said, "Oh, why don't I vacuum the living room while you sweep the kitchen?"  Sounds reasonable, right?

J.R. responded immediately by plugging his ears and hysterically trying to clamber to his room.  Remember how wonderful of a mom I am?  I grabbed him, trying to be a tease, and forced him into the living room.  Seeing the sheer terror on his face and the tears brimming, I decided the force had to go and the understanding had to come.  I calmly asked what, why, and how the vacuum terrified him.  He couldn't really answer me definitively, although he tried.

I decided to try something.  I let him hold the plug and touch the vacuum.  I encouraged him to push the on/off switch; and touch all over the vacuum.  I wanted him to get to know the vacuum.  When I could see he was still completely terrified after plugging it in, I led him to his bedroom.  While sitting on his bed, we practiced plugging his ears for three counts, then not plugging his ears for three counts.  Then we took turns being the vacuum while the other person counted and plugged.  When he felt comfortable enough, I went and vacuumed the living room while he plugged and counted.  No screaming, running, slamming doors, or tears ensued.  It was a small success.  I then asked him to unplug the vacuum for me.  He asked me to go with him, and so I did. 

This is not the only irrational fear that my son has.  This is only ONE of them.  Dealing with these fears has been very difficult and yet educational for me.  The biggest breakthrough for me was when I finally admitted that I didn't understand them, and then asked myself how could I understand.  That's when I realized that I have fears that seem irrational to others.  My irrational fears usually have to do with reptiles, amphibians, and the dark.

We seem to think that dealing with our fears head on and jumping in to them is the way to "get over them," or that doing these pranks (like me pulling my son into the living room) will help us; that it will be therapeutic.  The truth is, I think it's actually more detrimental.  How would I feel if someone stuck a snake around my neck, or even worse, a frog down my shirt?  I'd probably scream!  (Now, don't get any ideas.)  And then, I would never trust that person near me again with anything moving.  EVER.

How did my son feel today when I was carrying him to the vacuum?  How did he feel when I turned it on, even just for three seconds, without his permission?  I daresay he felt violated.  I took the trust and stomped on it.  That's why we did the "vacuum therapy."  I had to regain his trust.

I find that I have to constantly rebuild trust with him.  It pains me that I have to do this because it means that I keep breaking that trust.  It's hard.  I don't fully understand, and I never will.  The one thing I want, though, is for my child to feel like he can always come back to me.  I need to figure this one out.

How do you deal with your child's irrational fears?

Tuesday, September 28, 2010

Decoding Autism

 Last night I (Natalie) found the information that PBS in New Jersey was doing a documentary on Autism and I knew I needed to watch it. LeMira and I simultaneously watched it together. We IM'd back and forth the things we found interesting. There were a few things that I took away from it that I wanted to share. I am sure that LeMira might have a few more that she will want to share.

1. There was nothing I could have done to prevent it or detect it before birth.
2. I am not alone in this. There are so many other parents out there struggling with the same things.
3. Research is being done in order to give me more answers.
4. I am already doing the best thing that can be done, being an advocate for my children.

So if you have an hour free, please watch this video. We aren't anywhere close to understanding Autism but with more and more information and Research it is only a matter of time!

Decoding Autism

Sunday, September 26, 2010

The Results Are In

On Thursday, as I (LeMira) drove home from the appointment with the psychologist, I had many thoughts.  Above all, this thought pelted me:  Why did I go?  Here are the answers I gathered.

1.  We have a diagnosis and an explanation.  Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  It turns out that my son's delays are NOT due to prematurity.  In fact, I was told to throw that excuse out.  It has NOTHING to do with my son's issue.  PDD-NOS is, in fact, hereditary.  J.R. would have had it even if he hadn't been premature.  I can even tell you that it comes from my husband's line. 

2.  I was validated.  All of the little tactics and ideas I've had that have popped into my head to try were right.  Everything I've been doing to try to help my child are just what he's needed.  I'm not too involved in my child's life; I'm not a bad mom.  My instincts were right, and I was not grasping at straws.  To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd.   In the end, he told me that all of my concerns were exactly what PDD-NOS is.

3.  I have some strategies that I can use.  I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.

4.  I have confidence in my abilities as a mother and knowing my child.  Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.

I can not tell you the relief I felt when the doctor officially gave the diagnosis.  I physically felt a burden lift off my shoulders.  This is something I can accept, something I can work with.  I have answers and now I have a definite direction.

Thursday, September 23, 2010

Today's Fear

Today's the day.   Today my little guy sees the child psychologist for his multi-disciplinary assessment.  Basically, J.R. is being tested for anything and everything (ADD, ADHD, Autism, etc.).  I admit, I'm nervous, scared, anxious, and worried. What if the doctor doesn't see what I'm seeing?  What if I forget to tell him something?  What if the tests come back negative?

Okay, so I'm sure it's not going to be black or white/positive or negative, I mean, we're seeing a psychologist; but what if there aren't any "abnormalities" other than just the tentative diagnosis* (Cerebral Palsy) the neurologist gave us a month ago?  A million questions are running circles in my head, and you can imagine that for someone who gets motion sickness like me, that it's quite sickening.  Here are just a few that keep making laps around my brain:

If J.R.'s behaviors are normal, does that mean I'm just too impatient with him?
Is it just my fault?
Will he not get the help he needs in school?

Is there nothing I can do?

Sure, some of these sound selfish, but I don't mean them to be.  I'm really worried that what I'm doing as a parent is HURTING my child, enabling him to continue these poor behaviors.   Seriously, my biggest fear today is not that J.R. will throw a fit, get angry, or do nothing; my biggest fear is that the doctor will tell me that it was a waste of time and that there is nothing we can do to help my child. 

*It's a tentative diagnosis because it will only be definite if we decide to give J.R. an MRI to determine if there's brain damage.  We're still deciding what to do with that one.

Monday, September 6, 2010


Do you ever just throw your hands up in the air and say "I give up!"? I did that yesterday at church after my youngest was brought to me twice, the second time for running out of the building away from the sweet pregnant lady that was in-charge of him. And this is supposedly my mild child! As she ran after him she said he was laughing and smiling and thought it was a game. Never mind that our church is on a very busy street or that this woman was in no condition to chase after him. All I could do was look at her as she was apologizing and say "It's ok, this is nothing new. I'm sorry."

So I have two dilemma's here. Both have nothing to do with having a special needs child, except that maybe I am confronted with these situations on a more regular basis than other mothers. First, how do you stay motivated to discipline your child when you feel like you are really punishing yourself?

I have been given so much advice, as I am sure most mothers are, on the "how tos" and "what withs" of discipline. But rarely have I been given advice on how to survive said "how tos" and "what withs". "Take away his favorite toy", "Take away the Tv, video games, bicycle, ......", "Put him in time out, on his bed, in his room.....". Unfortunately all I hear is "Take away something that will keep him occupied", "Take away your peaceful productive time", "Stand behind him in time out, by his bed, outside of his room". Now I admit no one ever said disciplining is easy, but what if your child doesn't learn after three or four times. What if this becomes your whole day, week, life? I am sounding mellow dramatic I admit. But after yesterday and realizing that I am spending most of my life saying "Don't, Stop, Come back here, Don't smile at me when I am punishing you, Go to your Room, Put your nose on the wall,......", I can't help but think I must either, A. be doing something wrong, or B. I just haven't got something right. Advice is always welcome! (This doesn't even delve into all of the reward systems that we have set up and then watched fail miserably!)

My second Dilemma has to do with my youngest child. How do you discipline a child who thinks it's all a game? Micah is so incredibly different than Isaac which, from what I can tell is exactly how it is supposed to be. Who knew two kids with the exact same diagnosis, same parents, and same fondness for trains, could be so different to discipline. I remember my father talking about how it was night and day disciplining my sister and me. I thought "well of course, I was obviously better!"  The easy answer to that is no, I just had easier motivators/reinforcements than my sister did.

Micah is a breed of his own. Trying to figure out what is going to motivate him enough each day is like solving the Sunday paper's crossword puzzle. Half the time he laughs at me when I try to sternly reprimand him. Which leads me to get more angry (who wants to be laughed at while you are trying to impart right and wrong?) It all devolves to one big crying, spanking mess very quickly. Can you figure out which one of us cries first?

I think this is a common mom thing. You don't have to have any specific type of child to feel the pressures of teaching your child right from wrong. But when you spend most of the day trying not to throw a bigger tantrum than your child, disciplining with love and logic seems like something that might be possible on Mars. So, great and wonderfully wise mothers out there..... How do you do it? What are your tricks? What keeps you sane and can you sell it to me?

Thursday, August 26, 2010

Social Skills

Some people are born with an innate sense of social awareness. I have always thought of myself as a people person. I tend to get along with most people and generally like most people. Social situations don't usually scare me, I just go with the flow. So when your child, who shares your genetic make up, has trouble in social situations, it is sometimes hard to understand how they could just not get it.

Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.

Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out.  But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.

So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.

 The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.

As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.

This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.

I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.

On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!

Friday, August 20, 2010

Professionals' Opinions

I found some great videos (on an adoption support site of all places) from a conference that was held last year with a panel of professionals who speak on autism (and mention very little ADHD/ADD).  They were beneficial and educational to me as a parent. Maybe they will help you.

My favorite quote:  "Once you've seen one child with autism, you've seen one child with autism."  ~ A parent of a child with autism

Thursday, August 19, 2010

School is Almost in Session

 Last spring, as the end of school approached, I started to dread the summer. For a while, I counted down the days until school.  Until today, I thought I was the only one in my household doing that. 

The first week of July, I noticed that Jackson started getting very clingy.  He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room.  This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]."  I worried and worried about him.  Separation Anxiety at six years old?  What was going on?

Yesterday I took him to his new school to meet his teacher.  As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school.  I don't want to go to school."  It hit me then.  How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school?  His anxiety about the new school year has been going on since the last day of school in May.  He has been worried all summer long.

Suddenly, I'm panicking inside, too.  Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace.  He excelled there.  This year I chose to keep him in Kindergarten because of his social skills - or lack thereof.  I debated and debated about where to send him to school, and I finally decided on a local charter school.  Fewer students=smaller class sizes, right?  I found out there are 30 students registered in his Kindergarten class.  30, really? In a Kindergarten class?  Yeah, Panic Attack.  The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class.  Jackson needs and is ready for the 5 day/all day Kindergarten.

Over the last few days, I've been fretting and fretting about how he will handle school.  Will he be so lost that he hates it everyday?  Will he be brave enough to ask what he doesn't know?  Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him?  What will he do without me?

There, I said it.  I think he needs me.  I can't let go.  I want to let go, but can't.  How do I do this?  Jackson needs advanced warning.   School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school.  I have a few ideas.

  1. I'm going to call the school next week after it's started for the other grades and ask to take him around the school to see everything.
  2. Go to the bathroom and flush the toilet; let him practice going by himself.
  3. Teach him what he needs to do if he has to go to the bathroom, get a drink, etc.
  4. Remind him to take deep breaths when he's frustrated and perhaps teach him to squeeze the table or his feet if he is frustrated (usually he squeezes my hand hard to get the deep sensory stimulation that he needs).  
  5. Tell him that I love him and that he will be okay, and that it will be fun!
 I could use all the advice you've got.  What do you suggest?

Tuesday, July 27, 2010


Hi, all!  I'm LeMira, and Natalie asked me to contribute to this blog.  So, here is my first post, and you'll get to know more about me and my son as I write more.  

Last night I had a talk with a friend who teaches children with special needs at a school just for them.  When I learned this, I opened up about my concerns with my six year old son, Jackson.  You see, I am getting him tested for PDD-NOS in the next two months.  In our conversation last night, my friend Janet mentioned that it's okay to grieve over what you you thought you were going to have but aren't.  (Does that make sense?)  So many times we associate grief with death or a loss that we could touch, but grief goes deeper.    Grief is natural.  Grief is okay.  Grief is necessary.

Grief is natural.  Grief comes with any loss, even if it's the loss of that dream you had, that vision of having children with no special health care needs.  Most moms had a time in their lives when they were little girls and dreamed of being a mommy.  We held our dolls, sang to them, fed them, and changed their diapers.  We played "House" with our siblings and friends - taking turns being the parents and the kids.  When we were pregnant, we talked about the dreams we had for our kids.  We thought about that first day of school, and what their lives would be like. We had dreams and visions.  Those dreams and visions have had to change.  Perhaps they can still be, but we will get there via a different path than we had planned, and it hurts.  It's normal.  We grieve over the other path, the one less rocky (yeah, that one that you see cleeeeeeaaar over there).

Grief is okay.  Don't beat yourself up for missing that other path.  It doesn't mean that you don't love your kids.  It doesn't mean that you aren't grateful for the blessings in your life.  It doesn't mean that you would change it, but sometimes it just hurts.

Grief is necessary.  The only way to move ahead on this path is to grieve over the path you didn't get first.  Let it run its course - shock & denial, guilt&pain, anger & bargaining, depression/reflection/loneliness, the upward turn, reconstruction and working through, acceptance and hope (see this link for more information).  Where are you in your stage of grief right now?  Think about it.  When you first knew that something would be different with your child, how did you feel?

Did you deny it?  (I was in denial for much longer than I care to admit.)
Did you blame yourself (guilt/pain)?
Were you angry at the therapist or school teacher who informed you, or did you tell yourself that you could change it if you just did such and such (anger/bargaining)?
Did you fall into depression because you didn't know what to do; did you feel alone, like no one understands or that it's you alone bearing this burden?
Did you find resources to help you?
Are you learning to work through it all?
Have you accepted it?

There is no timeline in grief.  It is different for everyone, and it's possible to move through the stages at different rates, in a different order, and repetitively. I can tell you that I've gone through several stages multiple times.  For example, I've accepted some things, but I'm still depressed about others.   I personally believe that if you don't allow yourself to grieve, and you skip right to acceptance or  you get stuck in denial, you will eventually get stuck in depression, and you could possibly go wacko. Tell yourself that your feelings are normal and natural.  Then, you will move on when you are ready and start rebuilding your life for the way it can be, not the way you thought it was going to be.

Sunday, July 25, 2010

Not Otherwise Specified...... and that means?

In the last year since both of our boys were diagnosed with PDD-NOS we have tried to figure out exactly what that is. What does it mean when your child carries the label Not Otherwise Specified? Well I have come to find out that the professionals are just as baffled as we are. In short what I can tell you is that my two boys share many irregularities similar to Autism but not all, really not most. I have often wondered if it wouldn't have been easier if their disability had been more severe. Then I realize how ridiculous that sounds and ask whether MY brain has malfunctioned. Of course it wouldn't be better if they were more severe. Granted it would have been more obvious to me and all those around me that something more was going on. It may have caused the ball to get rolling sooner with testing and intervention. But my children's futures are promising when so many children with more severe diagnosis will have a much harder time.

So there is a point in here. Today a sweet lady came up to talk to me about Micah. He was sitting in the women's auxiliary class at our church with me because he just couldn't handle the children's class today. We talked about how she used to work as an aid for children with Autism and Aspergers. She commented that it must be so great to have such a high functioning child. I agreed it was great that they functioned so well. She said that if you didn't know some of the peculiarities of the diagnosis you would not know that Micah had anything wrong with him. I just sadly smiled and said "And there is the root of all of my problems." As a parent where both my children are "abnormal" I didn't know the difference. All the parenting advice I was given strictly forbade comparing my child with another. "Every child is individual and learns and grows at their own pace. Give them time and everything will be fine." That's a good rule in general but in the case of Special needs..... not so good.  You keep waiting for your child to catch up and then there is a huge gap because you waited too long. It is hard to have a child on the edge of normalcy. While people watch my children I see them tilt their heads and squint going "Wait, did he just do that?" or "hmm something's a little odd about that one." You never know what to expect from them. Some days they function great, practically perfect. The next it is total meltdown and regression. I spend most of my time explaining behavior to people we come in contact with. Most of the time during the day I am disciplining and I find it hard to recall praising the boys at all. Then I read books that tell me my child thinks differently and I feel guilt over my expectations and punishments when he JUST DOESN'T GET IT! (or does he?)

As my family and I travel down this road together I just hope that forgiveness abounds. I honestly don't know what I am doing. But I am doing something and that is going to have to be enough. So yes I am thrilled that my children are so high functioning. I feel blessed everyday.......... after I eat chocolate and take 5 Ibuprofen.

Tuesday, July 6, 2010


I have been thinking a lot about what my expectations should be for my children's lives. Many of the books that I have read about children with disabilities have cautioned against too high expectations which can lead to regression in a lot of those children. As a parent it is hard to know how high is too high. Here is what I do know.
            - I will not let my children use their disability as an excuse. Yes it is a limitation but don't we all have those. I struggle with math but my father wouldn't let me take the easy way out. I spent more time than others on homework, studied more for tests and was darn proud of the 81 that I got on the test. It wasn't an A but it was the best that I could do. That is what I expect of my children.

          - I will not let them forget they are valued. Their contributions are just as meaningful as someone who does not have a disability. Just because not everyone understands how they think doesn't mean that what they think isn't important. I expect them to share their ideas and their feelings because they are important.

         - I expect them to accomplish great things. I will not specify what those things are, they get to choose. But whatever they choose I know they will do their best. In the end it's enough.

So later when I feel a hint of disappointment when my child is not keeping up with the others around them I have a checklist to go through. Is my child using his disability as an excuse? No, check. Does my child feel valued? Yes, Check. Is he accomplishing great things? Always, Check.

Expectations met!

Saturday, July 3, 2010

Don't take your bad parenting skills out on my child!

As mothers of children with or without special needs I am sure you have been in a similar situation. That is why I am posting this rant, I think you will understand. The nature of my children's disability is such that social interactions are incredibly hard. This is most of the reason I don't take my children in public very often. Today I decided to take the boys to a little water fountain park that we found last week in the middle of a small state park in the town right next to us. I wanted to let my husband have a little alone time and it was very hot so I thought the boys would like the water. We had a pretty good time when we first arrived there. There weren't too many kids and the boys and found some friends to play with. It happened so fast I hardly knew what happened. All of a sudden I heard this woman yelling, "GET OUT OF HER FACE FOR GOD'S SAKE!!" I turned to look and there was Micah hunched over smiling very very close to the little girl he had been playing with's face. I turned to find the Mother who was yelling while I made my way over to Micah. She of course was just sitting on a bench 5 ft. away from the situation yelling. Another woman of the same party came over and picked up the little girl and I made it over there and asked what had happened. She was very kind and said, " oh nothing, he was just a little close and she was a little uncomfortable." I explained that he has a hard time understanding personal boundaries and she smiled and said it was all right.

So here are my gripes. I am sure you can guess the first. That woman had no right to yell at my child the way she did. I don't like confrontation but I was very close to walking over to her and decking her. As a parent you are setting an example for your child and yelling should not be one of them. He was just trying to get her attention, granted inappropriately but first of all walk over there yourself and see what the problem is. Maybe it has been the experience with my children but the first thing I do when I see a problem is get myself over there and figure out what is going on. He wasn't hurting her, show a little maturity and act like the adult, not the child throwing the fit.

Second, I am so tired of always needing to hover. I am constantly on alert when my children are near other children. It is like I am not only watching my children but the children that are in the general vicinity to my children. It is exhausting! I am constantly having to facilitate almost every interaction to make sure that my children don't do anything inappropriate that will then cause them to lose their friends. I am always there to make sure that other parents don't get upset. I am always there to explain why my child does whatever peculiar thing he does. I am so tired, everyday I am ready to quit! But guess what I can't, and I won't because every new social interaction my children have they learn. Slower than other children but I am seeing progress. In the end progress is worth it and I will keep doing it because my children are worth it.

Tuesday, June 29, 2010

Just something from my brain to yours

Sometimes it is hard to watch other peoples kids. You have your usual reasons, but for me it can become depressing. Many of my friends have been writing about their journey with Adoption and I thought that maybe I should write a little something about my journey with my Special Needs children. I have occasionally commented on things here but I thought it would be nice to explain the emotions and reality of dealing with two children with Autism.  Never did I think I would be a mother of a special needs child let alone two. The day Micah started showing signs, I broke down and wept. God got an earful that day. It is hard to watch your child struggle at things his classmates and children younger than him easily master. When being updated by friends and family about their children I have to mute that voice in my head that tells me to be jealous. I try to be happy for the accomplishments of other's children. Their success in no way demeans my child's. When I struggle to not feel like a failure as a parent I have to stop and really think about my children.

Quite frankly they are amazing. As my dear friend puts it. They live with a different view of the world. They think differently, feel differently but are forced to conform to the standards that are set by society. It would be like putting on someone else's prescription glasses and then being asked to do ordinary tasks. And they try, and keep trying. We keep asking them to do these monumental things and they don't quit until they finally get it right. It may take them longer, it might not be perfect but their victory is all the more sweet. So in the end I don't begrudge parents their extreme pride in their children's accomplishments. I am right there with you, I just have something different to be proud about and it's ok.